Mel's thread

[Sluff]

Posted originally by Melshell:

 I'm a PD'er since 12/06, never tried hemo, but I would definitely recommend PD. As everyone else has said, you should familiarize yourself with each type of dialysis and see what's right for you. I happened across this site while researching my options, and it's FULL of great information and personal experiences from actual dialysis patients and their families as well as some care givers. Plus, the folks here are very knowledgeable and very supportive. Something I found very helpful when I was trying to decide was visiting a dialysis center. I toured the facility and was able to meet with the PD Nurses, and actually got to speak to people who were doing hemo, and PD. I'll briefly list some of the advantages and disadvantages of PD from my brief experience, as well as some things I wish I'd known to ask/request of the surgeon who placed my cath. Advantages: more liberal diet and fluids, performed at home- generally at night while you sleep, can continue to perform most normal activities even while connected-kick back in your favorite chair, or even go outside, alot of mobility, alot of flexibility in scheduling-no certain time to get connected (just have to spend required number of hours), you are in control, you don't have to get dressed, don't have to go anywhere, and you can have as much company as you want-no limit to visitors, or as much privacy as you want,travel is possible, and a lot easier-throw your supplies in the trunk and hit the road-no headache of calling ahead and making arrangements for treatment at an unfamiliar center, PD Nurses on call 24 hrs for questions or concerns. The ABSOLUTE best advantage is that your days are free, you are dialyzing daily which to me is more natural, more closely resembling what your kidneys would be doing naturally-a lesser build up of toxins, and you can live a more normal life. Disadvantages: surgery to place the permanent catheter, surgery to remove it (not bad-usually same day surgery), altered hygiene routine until it heals-I had to do sponge baths for a while, really missed my showers, the tube protruding from your abdomen takes some getting used to (the actual catheter is about 3-5 inches long I'd say, and with the patient connector you're looking at about 8-10 inches I'd guess...)I'm still coming up with all kinds of creative ideas of what to do with it when it's not in use to secure it, and keep it outta my way!, they tell you not to do any heavy lifting, and to forego abdominal exercises to keep from upsetting placement, there's daily exit site care, you have to have room to store supplies (usually around 40 cases of rotating supplies/month), you have to be as sterile as possible when connecting and disconnecting to prevent infection, and of course, the biggie-you have to tied to a machine for 8-10hrs every night. The actual dialysis takes some getting used to as well: approximately 2L of solution is pumped into your abdomen during each fill cycle, it's like guzzling a 2 liter and it's uncomfortable at first, until your abdomen stretches. The dwell cycle can be uncomfortable-the time the solution sits in your abdomen--it kinda feels like you've just overdone it at Thanksgiving...There's something called drain pain that you may or may not experience when the solution is emptied which feels like varying degrees of pinching/cramping-not all people experience it. I'm still figuring out which solutions to use when, you are in control of the strength of your dialysis which you decide daily based on your wt., blood pressure, and fluid retention...You'll be trained to do all that. Of course alot of folks talk about restless nights from alarms, but that subsides, and you do have to get used to sleeping near a machine that can make all sorts of weird sounds at times, and you'll have to have somewhere for the machine to sit (you might want to look at the home setup thread, it has some pics) Some things I wish I'd known to request/ask the surgeon: If possible, make sure the surgeon is aware of your waistline, where you wear your pants/jeans-it can make all the difference in being able to wear clothes-I wish he'd placed mine even an inch lower!!-ughhh If you've always slept on your right side, then ask him if he can place it on the left. And finally, regardless of the instructions the surgeon gives you for after care, consult your PD Nurse for instructions-they almost always differ. I wish you the best of luck, please do keep us posted on your decision!!
 

 

[nextnoel]

Sluff, thanks for providing one-stop-shopping for PD pros & cons.  I am not on dialysis yet, and I am interested in knowing as much as possible about both PD and Hemo, so I can make a sensible choice when the time comes.  So far, I keep changing my mind from time to time; I'm hoping I can stay off dialysis a long time yet, but you never know . . . .

[Sluff]

I'm in the same position as you, the credit goes to melshell tho..

[nextnoel]

Well, thank you, Mel!  Knowledge = Power!

[KICKSTART]

An excellent description.Only a couple of things i would like to highlight..do make sure you can cope with the cleaning of your exit site, i am not queasy , but its one of the things that makes me cringe most , probably because of the lack of prep i had prior to dialysis (in fact looking after exit site wasnt even mentioned!) Another you mentioned was placement of exit site , even though i thought mine was below my waistline, i find it just sits on it , so jeans etc become uncomfy after a while, usually if i dont have to go anywhere i wera jogging bottoms (elasticated waist)Finally the last thing , which i think probably applies more to the ladies (or not?) is be prepared to look pregnant when the fluid is in there! Also your ability to cope with a tube sticking out of your stomach , i am not very good at dealing with either of these!

[goofynina]

To be honest, i have no problem with the tubing (neither does my hubby) as for cleaning the site, i just wash it with antibacterial soap in the shower, i do not dress it with the gauze and ointment, and it is just fine (Thank God) I do however hate the way it has made my stomach pertrude (stick out) more than normal, but i will take anything it gives me as long as i can stay away from Hemo 

[rimbo74]

How long do you have to wait before not covering your exit site with gauze?  I thought you always had to do that.  I'm hoping I can stop because the tape is really screwing up my skin around my exit site.  I'm tape sensative!!

[KICKSTART]

How long do you have to wait before not covering your exit site with gauze?  I thought you always had to do that.  I'm hoping I can stop because the tape is really screwing up my skin around my exit site.  I'm tape sensitive!!

I dont know what they do in the USA , but you are in Scotland ? I'm in the UK as well and as far as i know WE always have to keep our exit sites covered , plus if you do the same routine as me , we dont just wash with antibacterial soap !! (I take it you use Betadine or Normasol ? )I dont see how you could leave your site uncovered , not only does the dressing protect the site , but it helps  keep it clean. I have been doing CAPD dor 2 yrs now and NO-ONE  has told me i can leave my site un-covered. As for the tape issue , i think its a common thing that it irritates (always pretty much being in the same place) I did get a barrier cream to help with this , but tbh it made the tape stick so well that when i DID get it off, my skin was just a sore with all the pulling !! No - one seems to have an answer to the tape problem (or cares tbh) I have tried a few different tapes but all pretty much the same !!




EDITED: Fixed quote tag error - Sluff/ Admin

[MyssAnne]

I had to change my wardrobe, from zip pants to elastic waist/drawstring pants. Made me feel old!!!
As for the tube, I just stick it through my bra, in the front between my biznoobies, and let it
dangle. Usually my top is long enough to cover it. As for the exit site, Definitely wash it
after your shower, I do the cover up bit, just because it's more comfortable that way. We
were given the option of covering it up or not. I do use bandages, the 4x4 size, so no
tape is involved. I find it more comfortable that way.

[Chicken Little]

I was told I always have to bandage the exit site and use gentamicin cream.  I use as little tape as possible over the gauze pad, about 1/4 inch on each side, and I wear a patient's pride belt to secure the tube. 

I also have had to switch to a wardrode of sweats and knit pants.   

[goofynina]

How long do you have to wait before not covering your exit site with gauze?  I thought you always had to do that.  I'm hoping I can stop because the tape is really screwing up my skin around my exit site.  I'm tape sensative!!

It was because of the tape irritating my skin so badly that i stopped covering it up, i havent covered it up in about 5 months (or longer)  and so far, no problem (knock on wood)  PD nurse is well aware of this and has told me other patients have stopped covering it as well.    

[rimbo74]

Ok, good to know.  I might have to uncover it for a little while, just so the tape sores can heal.

As far as other things listed above, I have had to change what I wear, business casual, jeans, you name it, I still wear it.  I lay on my right side and my tube comes out of the left, which is great.  The surgeon put it about 6 inches to the left of my belly button and even with it as well.  It's perfect.  I use the PD belt.  I bought 4 of them for about $80 (US).  They are fantastic because they hold the tube in place around your waist line.

If you need info on the belt, let me know.

[goofynina]

Due to my *ahem* size, i cant use a belt but my PD nurse gave me some tape called Medispore, kinda like a cloth tape, works excellent, doesnt hurt my skin at all, so after i shower, just tape it up and go, Easy Peasy Lemon Squeezy  

[KICKSTART]

Ok, good to know.  I might have to uncover it for a little while, just so the tape sores can heal.

As far as other things listed above, I have had to change what I wear, business casual, jeans, you name it, I still wear it.  I lay on my right side and my tube comes out of the left, which is great.  The surgeon put it about 6 inches to the left of my belly button and even with it as well.  It's perfect.  I use the PD belt.  I bought 4 of them for about $80 (US).  They are fantastic because they hold the tube in place around your waist line.

If you need info on the belt, let me know.

If you wouldnt mind , i would like the info on the 'belts ' please , as we dont seem to have anything like that here. How much are they in ££££ and how easy was it to get them ,how long did they take to arrive ? And anything else usefull you think i need to know !!

[MyssAnne]

I wish mine was on the side. The surgeon put it RIGHT under the belly button. And the incision
is down lower, to the left. So, no zippers. Grrr. I hate the protruding, as GoofyNina as mentioned.
It bulges. Ugh. I feel fat as it is, without that!!! Oh well. One more thing to complain about, I guess!
I can't use the belt because of the position, I've tried it, doesn't work. That's why I just loop it over
my bra. Works well enough, since I do NOT go out in public without a bra!!

[carolyn77531]

i would like to have information on the pd belt....Jessica is tape senstive...i might let at nite when she is hook not to have exit site cover...her poor skin so red and irritated

[goofynina]

Please check out:  www.patientspride.com for the belt 

[carolyn77531]

i wonder if mecaid or medicare would pay for this..i need to look more into this...this might help jessica

[Sluff]

i wonder if mecaid or medicare would pay for this..i need to look more into this...this might help jessica

Sure wouldn't hurt to check it out.

[goofynina]

I believe they consider it a luxury and not a necessity but i guess it doesnt hurt to ask.  Please let me know what they tell YOU  

[melshell]

I'm 5 months in, and I'm still covering my exit site with gauze. I was instructed to clean my site with antibacterial soap daily after I shower, apply gentamycin ointment, and cover with gauze. My PD Nurse authorized me to order the 2x2 I.V. sponges which are slotted and work great! I had a SEVERE tape allergy as well, no matter what tape I tried, so I had to become inventive. I looked into the belts, there are several sites, but I am on a fixed income (i.e. NO income, lol!) and am pretty crafty, so I made my own. It's difficult to find a material that's stretchy enough to accommodate comfortably, yet will retain it's form after many uses--I went with a polyester blend. On a daily basis, I've found that a man's undershirt, or A STYLE T (commonly referred to as a "wife beater T") has been the most practical for me. I simply cut a small hole in the T, perform exit site care as instructed, with the gauze cover, run the tube through the hole in the T, and secure the tube to the T with tape. (I'll try to get some pictures to post) Of course there is always the worry that when I am out and about that if I become involved in an accident and am unable to speak with this setup, that it may be problematic--say if I got into an auto accident, and they attempted to cut or remove my clothes unaware that the tube was secured to them...(YIKES!!) My PD Nurse also told me that it was alright to leave the site open to air on occasion. Sometimes for example, when I'm going to hang around the house, I'll clean my exit site after I shower and simply tuck the tube under an ample bossom--That, I can't send pics of!! LOL!! (I guess that idea is along the same line of tucking it under your bra.) I am more comfortable and feel that my exit site is cleaner and better protected when it is covered though. The stretched out middle complaint I can definitely empathize with!! No buttons or zippers for me either!! ughhhhh!! I'm all elastic waist clothes too!! I agree ,as well , that it is comparable to atleast midstage pregnancy, including the lower back pain from a protruding belly!

(Thanks for fixing the thread Sluff!!)

[goofynina]

Hi Mel,  Just another suggestion for a supportive belt.  An Ace Bandage (like for sprains) seem to work well also,  just glue the velcro on and your good to go   just a thought you'd might like to try 

[melshell]

Great suggestion goofynina!!! I'll definitely give that a shot!! {{{{{Thanks}}}}}}}}

[carson]

when I was a kid I had my catheter right along my waistline and it was always irritated  by my pants, so this time I asked the surgeon to put it lower. What happened? Low rise pants!! Oh well, as long as I don't wear a belly shirt I'm ok.
I've been on PD 10 yrs and still cover my exit site. Sometimes I leave it to air-out, and since I do wear shirts most of the time I don't worry about anything getting in it. However, I do worry at night when my cats sleep with me, so I like to cover it up then. I  never have any problems though.
As far as the pregnant thing goes, look around. There are plenty, and I mean PLENTY of women who are not on PD who look a hell of a lot worse than we do!!
I think it's all in how you carry yourself and how you preceive yourself. I'm hot, I don't care what anyone says!!!